Ian Taverner: How Fibromyalgia has impacted me

It took a very long time for me to be diagnosed with fibromyalgia. For years I was back and forth to doctors, specialists, surgeons, therapists, you name it.  Operations, invasive procedures, injections, misdiagnosis, medications galore, but nothing helped.  

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Fibromyalgia Grief

The yearning for days gone by, nostalgia for previous abilities. Friends that no longer understand you and memories of your old life. Memories that feel like they happened to someone else. Not little old you.

So, what is it about living with Fibromyalgia that makes you’re feel like you’re suffocating in a cloud of grief? What are you grieving for? I’m grieving for spontaneity. I’m grieving for the way my body used to move. I’m grieving for my brain’s alertness and pain free limbs. I’m grieving for my premedicated self. My body, but mostly I’m grieving waking up and feeling well.

Not knowing how you’re going to feel every morning can be a hard pill to swallow (pun intended) Waking up, and for maybe a split second you feel as though you’re fine, you might even feel spritely, excited for the plans you made on one of your good days, and then you’ll try and get up. Trying to get out of bed uses energy you can’t spare and even drinking your morning tea feels challenging. Maybe like me, you have a school run and the thought of it alone leaves you exhausted. Or maybe also like me, you have a job and getting through the days is becoming more impossible, but still necessary, because you just can’t afford not to work. Or maybe you have nothing to do but even doing nothing is exhausting and you still feel as though you’ve ran a marathon.

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Fundraising Events

This year has been unlike no other. With a lack of clarity on so many things, and lockdown restrictions throughout the country, this has led to many fundraising events for the charity being postponed or deffered. It has been difficult for all of us, and we've seen a reduction in our income this year due to the pandemic. 

We have still had some fundraisers raise money for us, from a golf day to a virtual hadrians wall cross training exercise, we've still had some events take place and we are grateful to the effort of everyone invovled in what are very challenging times. 

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RC Vacancy: North West

We are currently recruiting a volunteer to cover our Regional Coordinator role in the North West area.

Our Regional Coordinators are our point of contact for new enquiries via email and telephone, provide support to the local Support Groups in the area, and represent FMA UK at events among other tasks.  

General duties of the Regional Coordinator include

• Keep up to date with FMA UK news from the FMA UK Trustees, office, website & social media
• Cascade this news and any other information to groups within the region by e-mail or snail mail.
• Keep in touch with groups in the region by e-mail, telephone, meetings or newsletter.
• Help to resolve local group difficulties, asking the advice of a Trustee if necessary.
• Represent the views of groups and helplines at meetings with the Trustees and report back information gained.
• Try to organise a regional meeting annually if feasible.
• Direct new enquirers to their local group or helpline.
• Answer regional e-mails generated from FMA UK website www.fmauk.org
• Represent the region when invited to specific meetings or exhibitions.
• Provide support for people who wish to set up a new local helpline or support group.
• When invited visit local support groups.
• Uphold the FMA UK confidentiality policy at all times, if in doubt make contact with the RC’s Liaison who will seek clarification from the Trustees if necessary.
• Attend meetings with trustees and other regional coordinators online via MS Teams and in person at annual Trustees/Regional Coordinator meeting
• Provide a monthly report for MS Teams meetings
• Comply with the Regional Coordinators expectations document.

Please submit Application form by email to This email address is being protected from spambots. You need JavaScript enabled to view it. by 26/10/2020

For further information - please email This email address is being protected from spambots. You need JavaScript enabled to view it.

Help us by shopping with Amazon

Do you do a lot of shopping online at Amazon? Did you know we can benefit from every purchase you make? By signing up to Amazon Smile and selecting us as your charity, 0.5% of your spend will go to FMA UK at no charge to yourself. Since signing up, over 500 people have signed up chosen us as their charity, with over £1,000 being donated to us by Amazon. 

You can get involved today in just a minute! Click on the link smile.amazon.co.uk/ch/1042582-0 to get started and selected us as your chosesn charity. It doesn't cost you anything extra. Just simply make a purchase and Amazon will donate a percentage of it to ourselves. 

Matthew Dobson: My fundraising for FMA UK and why I am doing it

I was diagnosed at 22 with chronic fatigue syndrome. It had taken 2 years of back and forth testing and different Drs and more testing, before the diagnosis. From the diagnosis I wasn’t offered much. “Rest” and “exercise” was about it. 

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